Anyone on NuVigil / ProVigil?

In My Humble Opinion
1

Just got the results from my latest sleep study - this time an all-night, all-day one so they could have me do a MSLT (Multiple Sleep Latency Test). The thing with the MSLT is they have you lie down for 20 minutes at a time, every couple of hours, to see if you fall asleep too fast.

Of the 5 times, one time it took me 15 minutes to fall “asleep” (not sound asleep, but apparently that light “drifting” at the beginning of the night counts). The other times, it took anywhere from 2 to 5 minutes. My average, therefore, was something like 6 minutes.

“Normal” is 10 minutes. A narcoleptic might fall asleep almost instantly, and is likely to hit REM sleep rather fast as well (I didn’t hit REM during any of the “naps”). So, while I’m not narcoleptic, I do have significantly increased sleepiness during the day even when “well rested”.

So my choices are: live with it, or take drugs during the day. The first line being NuVigil (preferred over ProVigil because it’s once-a-day, I think).

So - anyone have any experiences they’d like to share? I remember Sampiro mentioning possibly trying it, a few years back.

2

My father and a close friend are both narcoleptic and both either are taking or did take both ProVigil and NuVigil. Because of my dad’s other health problems (he can’t take care of himself completely) I know a substantial amount about narcolepsy and his medications, but obviously I can’t speak from personal experience.

Do you know what the drugs mean to you financially? They’re very expensive without insurance and with good coverage not a big deal. My dad stopped taking either of them because they were so expensive and his alternative was to nap throughout the day. He says he doesn’t feel much different on or off them. My friend, on the other hand, pays no more for hers than I do for my blood pressure meds, and much prefers it to being sleepy.

If it were me and I continued to have the good insurance I do, I’d definitely take them.

3

My insurance isn’t the best, for Nuvigil anyway. I did a pricing lookup the other day and it’d cost me 120+ per month. The funny thing is: they pay less for the supply of Nuvigil than they’d pay for a comparable supply of Provigil - but make me pay a far larger percentage of the cost. It’s all got to do with formularies or something, I think.

I think my husband’s insurance has better coverage for stuff like that - almost enough better to make the much higher cost worth it.

I would save something if I only took it on work days; the person at the doctor’s office said that’s what most people do.

4

I tried some Nuvigil samples from my doc, which worked well enough for me to get a prescription, but even after my insurance paid a chunk it was like $280 so I said to hell with it. It helped, but not almost ten bucks a day worth of help.

5

I hope it all works out for you. It’s a shame how expensive medications for narcolepsy or related sleep disorders can be. My dad also needed to take Xyrem for several years before he stopped for financial reasons. It was about $36,000 per year in actual costs and over $1000/month out of pocket after his insurance benefits.

6

I was on ProVigil, my doctor switched me to NuVigil, and with both I could tell a definite difference. Unfortunately my insurance has stopped paying for it.

Must run but more later.

7

I understand provigil will be going generic soon (which is why the company made nuvigil), so there should be cheap generic provigil available.

8

I’ve heard that too, including from my brother who’s an independent pharmacist.

The most important thing to know is that provigil/nuvigil are NOT miracle drugs- you don’t notice a huge difference immediately or even after it’s had a few weeks to build up. It’s a gradual and slight effect- in my case I started to wake up before the alarm clock(s) some days, which never happened before, and I wasn’t still groggy an hour after I woke up. It also regulated my sleep schedule a bit- I was genuinely tired at bedtime but not in the afternoon.

I find the most important things in self-medicating since my insurance currently doesn’t cover the drug and I can’t afford to pay for it (it’s several hundred dollars for a month’s supply) is setting a ritual to bedtime and waking and making sure you go to bed in time for a reasonable amount of sleep (whatever that is to you). I still can’t function well if I don’t get around 8 hours of sleep, and actually one of the biggest differences I noticed on Nuvigil and Provigil was that on those mornings we all have where we just couldn’t sleep the night before I was able to function infinitely better after a 4 hour sleep night while ON Provigil than I would have functioned WITHOUT Provigil.

That said I’d really like to try Adderall both for sleepiness and ADHD. Has anybody had any experiences with it?

9

Googling suggests Provigil will be generic in 2012. Maybe sooner if you’ve heard differently.

No personal experience with Adderall; my daughter took it for a bit for her ADHD-like symptoms. We think it helped her focus a bit more, but it also made her behavior MUCH more volatile (which we’d been warned might happen). In her case though, she doesn’t necessarily have “pure” ADHD, more of a bunch of emotional syndromes that manifest as ADHD. She also reacts paradoxically to some medications - e.g. we were told to give her Strattera (alternative to the Adderall) at bedtime because it can trigger sleepiness - and she had awful sleepLESSness, so we switched it to the AM. Ditto when we needed to put her on Zyrtec for allergies. So her experience wouldn’t necessarily apply.

Good point on getting adequate sleep / good sleep hygiene. One of the things the docs had me do was keep a sleep log for 2 months. It was actually sort of surprising to see my patterns; I wasn’t getting as much sleep during the work week as I had thought, until I started documenting it. When I was off for Christmas break, I slept as late as I wanted to every day for 2 weeks. I was averaging 9 hours a night. Of course, my schedule was also sliding later and later. Maybe my natural rhythm really is for a 25-26 hour day. But at least I wasn’t crashing every afternoon the way I usually do!

10

Bump / status update: Right after that last posting, I had a nasty asthma flareup; it was a month or more before I felt normal. Didn’t feel like adding Nuvigil to the mix since I was on steroids for the wheezing.

I finally tried the stuff in earlyish March. I was to take 1/2 of a tablet (i.e. 75 mg) for a few days, get my blood pressure checked to make sure I wasn’t working on having a stroke, and see how I felt; then to increase to 150 mg.

The first day I tried it, I was definitely not quite as zombified as usual. I did have some trouble sleeping well that night (light sleep, weird dreams) but persisted and that effect seems to have gone away. Similarly the first night on the full 150 mg tablet.

Then I got sick again with another asthma flare and was having horrible luck sleeping at all because of the lungs. So I quit the nuvigil again. As the flareup got better, I tried taking a tablet one day and whoops, either I took it too late in the day (closer to 1 PM than 8 AM), or I just have a problem with when I first start the stuff… but I had a night of almost zero sleep between the coughing and the drug. So I took a couple more days off.

I took a dose when I saw the doctor about 2 weeks ago, and my BP was definitely up, but that may have been because I was also on prednisone for the asthma. I see the doc in a couple of days and will get a prednisone-free BP reading so we’ll know if I can even continue to take the stuff.

I tried it again starting this past Friday - a split dose at 9 AM and 1 PM - and felt good that day. I’d gotten a fair amount of sleep the night before, and felt well enough to drive 8+ hours without getting drowsy. But that night I had an awful night’s sleep. The next day, I did similar dosing and had no sleep issues. Didn’t feel as good during the day, I guess because of the bad night’s sleep, but I did manage to function relatively well.

I will say, that days where I’ve taken it AND had a decent night’s sleep, I feel… “normal”. I think. Being so sleep-deprived for so many years, I don’t really know what normal feels like. But it seemed like I just felt well-rested and alert.

So anyway - if it doesn’t seem to be doing much to the BP, I guess I’ll persist and try tweaking the dosage / timing to see how I do with alertness without screwing up my sleep patterns.

11

I went through a period of on and off narcoleptic attacks, falling asleep at the wheel while perfectly rested.
I was put on provigil, but i used it as needed, i did not use it as a routine.
It worked really well and probably saved my life.

At the time it was 200$ a month with federal blue cross insurance, which is supposed to be pretty good, and you can not bulk order it via medco because of its classification.

my sleep patterns are garbage as an architecture student so i cannot comment on how it would work in with yours

12

I’m pretty sure my dad pays $50 a month with Arkansas Blue Cross Blue Shield. And that was only after the doctor’s office stopped ordering him samples when Provigil was no longer offered as such.

It doesn’t fix everything about his narcolepsy, but he’s definitely a lot worse without it. And he also has sleep apnea, so that probably plays a part.

13

It’s $700+ without insurance here (Denver). I had it once and loved it, but I don’t have insurance now. :frowning:

The first doc told me that docs in the ER take this to stay awake.

14

I just wanted to share that I have Narcolepsy with cataplexy. I was recently prescribed Nuvigil. I do not have insurance. The medicine priced at my pharmacy was 700+ dollars. I went online to google and searched the medicine. I ended up on the manufactuers website. There was a card on the site I printed off and took to my pharmacy. I got my 700 dollar medicine for free and my refills will only cost me five dollars. I have never heard of this before. But apprently a lot of drugs have coupons on the manufactuers website. I also did this for the zoloft i was prescribed. That was close to 300 dollars. I got it for 30 dollars

15

Since I feel like a zombie if I don’t take my wake-up meds, this is an appropriate thread to re-awaken :).

Yeah, those coupons can be amazing. They only do it for the stuff that’s still under patent, to get you used to using their product. And I haven’t gotten nearly as good a deal as I did a couple years back where they paid the entire copay - when it was the first fill under a high deductible plan, that meant 500 bucks I didn’t have to pay (and insurance counted that toward the deductible anyway).

Provigil is the older version and there is a generic available, though I am not sure how much cheaper it is. I have insurance and right now, they only pay for Nuvigil - NOT Provigil/generic, which is really strange. The previous insurance only paid for Provigil vs Nuvigil once Provigil went generic. Annoying.

16

Oh yeah: back in 2011 when I first tried the stuff, I was dealing with an asthma flare (mentioned upthread). We were on vacation visiting family in Florida as that was resolving, and I’d had 8-9 hours sleep every night for a week so I was as well-rested as I ever am. So, our last day there, when we were loading up the car and getting ready to spend the next day and a half on the hell that is I-95, I took my Nuvigil.

And it scared the HELL out of me. :eek::eek::eek:

You see, I felt good.

Not “WHEEE I’M FLYING” or drunk or anything… just, weirdly not-tired. I’m not 100% sure, but I think it’s what people feel like when they sleep, and the sleep refreshes them. Yanno, like you’re SUPPOSED to feel after a couple good nights of sleep.

Having not felt this way in something like 20 years at that point (2 kids, dontcha know), it genuinely frightened me. I was driving - and I kept asking my husband “Am I doing OK? I’m not driving erratically or taking any chances, am I?”. He kept assuring me I was doing fine. I wound up driving about 9 hours that day - normally we switch off every 2 hours but that day, I didn’t need to trade places until early evening.

For that reason alone, I felt like the stuff might cause dependency - it felt GOOD feeling rested.

Luckily (hah) for me, I had a nasty rebound that night, which was a pretty powerful disincentive. And I’ve never had the same effect of feeling “good”, since then - just less stumbling into walls.